in limbo

I am sorry that it has been so long since I have sent an update.  Between life, the holidays, and my scrambled brains...coordination has been difficult (pun intended.)  I went to the doctor this morning and finally have enough to share.

A month ago, I experienced a fairly significant increase in my symptoms (tremors, migraines, and convulsions.) Following a day of continuous movement, and I mean the involuntary type, I developed a headache that would not go away.  I awoke the next morning with continued pain.  After being awake a few hours, I suddenly lost the ability to move my left arm.  I began to drag my left leg a little as well.  This improved almost as quickly as it occurred and within a few days, I had regained full use. 

I notified my neurologist the following morning about the new symptom and of my concern.  I was assured that I just needed to increase my medication during those times.  I stressed that the increase made it impossible to stay awake, but my doctor's orders remained the same.  I have had three or four additional episodes that were less in severity but longer in duration.

I met with my immunologist today who agreed with my concern, but does not know of any new options.  He is considering putting me back on the Cell-Cept (immune suppressants) but wants to see my lab results and consult with my neurologist and immunologist first.  I have started taking Celebrex for the muscle and joint pain and I was asked to consider returning to the Mayo Clinic.  I will update when I have the results of the conference.  

...amongst the frustration

My hands are committing treason today and doing their own thing, but it has been so long since I have been able to share.  I placed my laptop on a table at a local coffee shop this morning.  I ordered a scone and large coffee, looking forward to a relaxing start to my day.  Within seconds, I tipped my cup with a rogue finger, but luckily, it just wobbled and corrected itself.  I took a deep breath and opened my scone.  After a few bites, I looked on the floor and realized that it looked like a child had been eating in my spot, then realized the mess was all my own. 

I began this blog two and a half years ago as a method to keep my friends and family updated.  It soon became a tool to express my feelings about my disease and current methods of treatment.  One blessing, I had hoped for and was given, was that I would reach other patients or family members with Hashimoto's Encephalopathy.  I recently received a comment on my last blog from a daughter of a HE patient.  My heart aches for the pain she experienced, but I also rejoice in and am comforted by her sweet words.  After all, there aren't swarms of people wearing support t-shirts or wearing ribbons for HE.  Lisa shared her father's experiences with various treatments.  That is why I do this. 

As many of you know, I first experienced mild symptoms (headaches, anxiety, difficulty with speech, hand tremors, and thyroid dysfunction).  I was hospitalized after starting to experience what was initially referred to as myoclonic jerks.  High dose steroids stopped the movements.  I had mild stroke-like symptoms for a few weeks, and then my only symptoms were from medications.  Complications from the steroids sent us to the Mayo Clinic searching for other possible medications.  After a relapse of myoclonus, I began Cell-Cept.  This allowed me to taper off the steroids, stopped symptoms, and within a year, I was able to discontinue the insulin from the steroid induced diabetes.  Nearly two years later, I began to experience tremors, poor motor skills, memory problems, and headaches despite the addition of Clonozapam.  My doctors and I agreed that the benefits from the Cell-Cept no longer out weighed the risk factors.

My immune system was fully suppressed for nearly 3 years.  Now that it is awake, it has started to attack the lining of my stomach and intestines again.  The tremors and muscle spasms now include my heart, creating arrhythmia's.  I  had originally been told that a pacemaker would be in my future, but I was told at my last visit that this may not be an option.  My Cardiologist is concerned about the complications my auto-immune disease would create.  He prescribed a new medication for the rapid heart beat I experience occasionally, but I have not been able to take this due to periods of time when my heart is slowing down too much. 

My Neurologist increased my medication to slow my tremors and aid with pain they are treating as fibromyalgia, but is common with HE.  However, I have been having trouble with it interfering with my work and need to drive.

I have begun to have dizzy spells after standing for an extended period of time.  This is most likely related to the low heart rate, but it could also be a result of my disease, blood sugars, or my medication. 

On a positive note, I was picked up by my husband's insurance during open enrollment.  This will mean we will be paying more than last year, but the benefits will be much better.  It is also less than what we would be paying if I had stayed with my own private insurance which was going to increase this month. 

Other than the dizzy spells, chronic fatigue, muscle and joint pain, arrhythmia's, and roller coastering blood sugars, all is well on this end!  I am taking my kids camping this weekend and I turn 34 in two weeks.  The holidays are approaching and I still feel blessed amongst my frustration.  

He prepared us for this...

Two weeks ago, I was in full mom mode.  I was taking my fifth and seventh graders to school, making sure home work was done, running Logan to Baseball practices and games, hauling Bradie to tennis practice, while figuring out how to fix dinner and keep up with household chores in the process.  This is not much different from what many American mothers are doing these days.  However, having a progressive neurological disease made this a little more challenging. 

We have been reducing the immune suppressants that were slowing the progression of the disease, but since I have had recent relapses and increased symptoms while on them, we decided that the complications and risk factors from the medicine no longer out-weighed the benefits.  I had begun to feel pressure building in my head.  After a couple of days, I began to feel my insides spasming.  Then the tremors started in my hands.  Random muscle twitching consumed my whole body.  Luckily, I had an appointment with my Immunologist scheduled. 

He introduced me to a new Physician's Assistant that had joined his practice.  He reviewed my case with her while I sat feeling a bit like a dancing chicken at the circus...and probably resembling one as well.  Lacking grace, I climbed upon the exam table.  I tried with all my might to not fall.  My balance has been hampered for several months.  We discussed my current symptoms and a previous relapse I had after my last appointment.  That relapse was the most intense one I had experienced since coming off of the steroid treatment.  It left me with stroke-like symptoms on the left side of my body.  I wasn't paralyzed, but had severe weakness.  Like trying to walk through water, I was capable, but all movements required concentration and more effort.  Sitting on the exam table, I was asked to perform a few tests similar to a field sobriety test.  I failed...miserably. 

My doctor and the PA agreed that I needed a new medication to calm this episode, but their first choices in medication would have been affected by my heart medication.  The PA suggested a drug she had used with patients who have chronic pain.  It would calm the nerves and slow the spasms and convulsions.  I was sent home for the day as they did not know if I would be capable of working or driving.  Remember the long list of responsibilities I mentioned before?  They also include working a part-time job.  I picked up my prescription and climbed into bed.

An hour into my first dose, I felt intense pain in my arms and legs.  Shortly after, I felt like I was boiling in my skin.  "These are just side-effects that will go away!" I assured myself.  Nearly four hours after taking the drug, my phone rang.  It was a nurse from my doctor's office.  "Whatever you do, do not take the prescribed medication!" I was ordered.  Uhhhh...too late!  I informed the panicked nurse that I had already taken a dose.  He then explained that my neurologist had been consulted and the new medication would increase seizure activity and cause a stroke in patients like me with a seizure disorder.  "Fantastic!" I said, not even trying to hide my sarcasm.  I was then instructed to increase my Gabapentin to 5 times my current dose.  "Hmmm...two makes me stoned," I stated.  "Well, this is what the neurologist would like you to try," he said. 

So, I have been taking a magic carpet ride for the last week.  I have not made it to the recommended dose yet, but I am getting there, and my body is slowly adjusting.  The doctors have done all they know, are grasping at things to try, but it is ultimately in God's hands.  This incident could have made me mad or scare me, but I am at a different place with my disease.  You see, I was prepared in a way for this time in my life.  Nine years ago, I layed in a hospital bed holding my infant son.  He had been diagnosed with failure to thrive.  He had stopped eating, drinking, and growing.  He had lost too much weight and a feeding tube was the only thing sustaining him.  We laid in a hospital while every available specialist tried but failed to figure out why.  It was obvious that we were losing him, and becoming clearer that we were running out of time.  His hair had fallen out, his skin was translucent, and the feeding tube had given him an infection in his lungs and sinuses.  We felt helpless and all we knew to do was to lift him  up to God and beg for protection.  I knew we had not lived lives that deserved his grace, but prayed for mercy.  Strangers entered our quiet hospital room in the darkest hour while we prepared to say goodbye to our baby.  They sang Amazing Grace, and prayed over him.  Thirty minutes later, my baby ripped out his feeding tube and screamed bloody murder.  The tool keeping him alive was gone.  I lost my mind for a moment, then noticed his screams had turned into a hunger cry.  He drank two bottles and ate three jars of baby food.  It all stayed down and he was released 12 hours later without a doctor's explanations. 

God had us then, and he has us now.        

Time reveals all

My last post was some what melancholy, but we now know that I was in the middle of an "episode."   I had begun to taper off my CellCept, but it had only been a week.  There is not any reason to think that this episode was triggered by anything other than stress and fatigue.  We began tapering off of the CellCept because we did not have any recent evidence that it was slowing the progression or that it was helping more than it was hurting.  For those who are walking a similar journey, please know that I fully support the use of CellCept.  Despite all of its downsides, it was my superhero that gave me my life back...spandex and all!  It allowed me to come off steroids and stay off of them. 

Normally, I am able to stop an episode by hydrating and going to bed.  I just wake up with what feels like a hangover...or like my brain was put in a Magic Bullet!  I woke up after this last episode with left side weakness...the typical stroke-like symptoms that are seen with people who first present with HE and are not being treated.  I have been on thyroid replacement for years, my immune system was still fully suppressed, and I was taking Clonazepam to help with the convulsions, and Gabapentin to calm the nerves.  So, we can say that this episode is just the natural progression.

Since then, I have recovered quite well.  I am down to a 1/4 of the CellCept without any major complications.  I have had a little more energy.  I still fight headaches and now have mini episodes when I am tired.  I just have twitching and small convulsions that do not last very long.  I feel blessed.  We have had a full summer of spending time with family, celebrating both of my children's birthdays, and time with friends (though not as much as I would like). 

My daughter went to an amazing tennis camp and a mission trip.  She has grown physically and mentally.  My son enjoyed having his parents to himself while she was gone!  I could not ask for more at this time in my life...well, maybe fewer medical bills...but then I am good!  hahaha        

With trembling hands

It is a little after midnight and I am waiting for my insomia meds to go into effect, despite doubling the dose.  I am fighting a migraine and I am struggling through tremors and spasms, because my anti-convulsants are not doing enough. 

Most of you know that a couple of days ago, I met with another doctor to get a second opinion on whether it was time to call it quits.  My miracle drug that allowed me to come off the steroids, kick the insulin habit, and allow my bones to strengthen, is no longer providing me with enough help.  I am taking the most that can be prescribed for someone my size, but the symptoms are continuing to get stronger and more medications are needed to keep them under control.  My miracle drug is very toxic, especially at high doses, so it was determined that the risks no longer out weigh the benefits.  When I began the CellCept, my immunologist said the only other option of suppressing my immune system, if the CellCept did not work, would be IV Chemotherapy.  But immune suppresion is no longer a goal.  I am too symtomatic to put my body through the risk and stress.

I just started back to work a month ago to cover costs for my medical insurance and bills.  My doctors told me that coming off the CellCept while working will be extremely difficult, but I do not have a choice.  While I qualify for disability, as a married person, I would have a two year hold to get medicare coverage.  I cannot work and get disability, but I cannot afford my private insurance without working. 

Anyway, I have to admit that I am a little frustrated that there doesn't seem to be anything else to try to fight my disease.  I am scared about how fast it will progress without the CellCept.  And I am sad that I feel so alone.  I have amazing friends and family who have loved me and supported me along the way.  But there are so few people with my disease, and of those, so few are progressive.  I am alone in the fact that so few of us are walking around with an advanced case because so many have had strokes, gone into comas, or died. 

I am sorry that I am not strong enough tonight to assure everyone that I will be fine or to crack the usual jokes.  I am just too tired.  I thank all of you who have been praying and keeping me in your thoughts.  Call me, text me, email me...and lets do lunch or something.  That will bring me joy!      

new adventure

Two years ago this month, I was diagnosed with Hashimoto's Encephalopathy, however, May was the 3 year anniversary from when I first noticed that I was sick.  Those who were along for the ride two years ago know that I was admitted to the hospital with convulsions, trouble with my speech, memory problems and some mild paralysis.  The fact that I was already on thyroid medication probably is why I did not go into a coma like many advanced patients do.  We also began high dose steroids by IV within hours.  I was blessed to have received the care that I did when I did.  After a few months though, we knew that the steroids were making me very sick, but my every time we tried to come off of them, I would relapse and my condition would become worse.  I would develop more symptoms. 

After a trip to the Mayo clinic and another relapse, I began seeing a Rheumatologist/Immunologist who started me on Cell-Cept.  This drug that is used as anti-rejection medication has similar immune suppressing powers as chemotherapy.  I was placed on the highest dose possible and told that if I made it two years, than we might start discussing whether coming off this medication would be possible.  After another hospitalization and being told that my case is progressive, no one knew if we would see the two year mark, and if I did, whether we would be able to even consider removing the Cell-Cept.

If you read the last blog I posted, then you know that I will be looking at a pacemaker in the near future and another surgery around my birthday to remove abnormal cells caused by the Cell-Cept.  While my health situation is not getting better, I was able to return to work after being "retired" for a year.  I met with my Rheumatologist today and I was completely shocked by the visit.  We discussed all of the health problems that have shown up since I was there last.  We agreed to meet again in September.  He asked me, "Do you know what September will mean for you?"  I knew that September was the month I first saw him.  He said, "In September, you will have been on Cell-Cept for two years."  I had not realized that.  "Do you think the medicine is still helping you significantly?" he asked.  I fumbled for words.  "Well, I know it is the only way I was able to come off of the steroids," I answered.  "Yes, but do you think that it is continuing to help you?" he asked.  I have had relapses while on the medication without significant side effects, but we are pretty sure that it is not slowing the progression of my illness.  So...drum roll please...we are going to try and taper down the Cell-Cept to just a fourth of what I am taking now!  This will come with risks.  If I relapse on a lower dose, I will run the risk of speeding the progression or being left with lasting side effects, but if it goes well, then I should have much more energy, have lower risk of infection, lower risk for cancer, and over all feel better!

 I have been determined that if my illness defined me, it would be because of my strength and the new ability to appreciate what and who I have in my life.  The doctor told me how impressed he is with how I have handled all that has been thrown at me.  I assured him that I do not have a choice.  No one asked me if I wanted to be sick.  I also have two amazing children that need me to be strong.  "Oh Kim, that is not true," he said.  "I have patients with far less debilitating illnesses that crawl in a fetal position and feel sorry for themselves," he explained.  I told him that I have had my fair share of pity parties, but two years has made a great deal of difference.  He laughed.  As he walked out the door, he smiled and said, "I have had two shoulder surgeries this year and I am not where I want to be, but I look at you and strive to be as strong."  Luckily he had closed the door before I started to cry.  Wow...we have come a long way friends!
  

Take up your cross daily!

 Most of you know that when I was diagnosed with Hashimoto's Encephalopathy, two years ago, I thought the time of suffering without any answers had come to an end.  However, being diagnosed with a rare auto-immune neurological disease meant that there were a few opinions about my illness, but very little knowledge.  The Mayo Clinic was clear about the fact that there would not be a cure, but that there were a few treatments available, and my body would decide if any of them were going to be right.  Two years, 10 specialists, and 22 medications later, we know that my condition is progressive, and is effecting almost every organ in my body.  A month ago, my kidneys were added to the list.  I have outlived the studies done on progressive cases, so I am treading in uncharted waters...and by the way, I don't swim!  I do doggy paddle and float on a sun raft with grace.

My point is that in the beginning, I was brave.  Truth is that it was probably a combination of being stubborn and in denial.  If it were a burning building, I probably would not choose to run inside.  I did have peace though.  I had faith that I would be saved.  We tried many different medications and they would give hope and short term relief, but none of them were magical.  I began to accept that the doctors were not going to save me.  I remember attending a funeral for one of the most amazing women I have ever met.  She had battled cancer multiple times while raising her two children, teaching at a school, and playing the piano and organ at church on Sundays.  Cynthia's children sat on the front pew, while people stood...one by one, to share how she had touched their lives by sharing her heart or showing compassion.  I was a new mom then and instantly knew that when my time came, I wanted to have lived a life that would make people want to stand and tell my children how I had made a difference.  But in reality, nearly a year into my illness, an anger grew. 

I was angry that I might not see my children grow and get married.  I was angry that my life had already seen so much pain and grief, and I wasn't getting the break I thought I deserved.  I was angry that people in my life continued with theirs.  I was angry that some who stood by me in the beginning grew weary and disappeared.  I wasn't living the life of a woman giving a testimony of how great my God is.    We are never promised that following God will lead to an easy or fair life.  In fact, Jesus says in Luke 9:23  "If people want to follow me, they must give up the things they want.  They must be willing to give up their lives and pick up their cross daily."   Over the last two weeks, I have learned that my heart isn't working correctly and that I will need a pacemaker and medication.  Last Tuesday, I received news that my six month cancer screening showed regrowth.  But I am not going to live my life in fear.  We have decided to stick solely with medication for my heart for as long as I can.  And since the re-growth of cells is due to the medication I am taking, and will take for the rest of my life, we have decided to wait six months and re-evaluate my status, rather than having another surgery.  I also returned to work part time on Tuesday after being home for the last year per my doctor's instructions.  Life is not a piece of cake, but I will pick up my cross daily and take one step at a time, trying to be an example the best way I know how.

 I have made plenty of mistakes and made wrong choices, but ultimately learned that my illness gave me a gift.  Several in fact.  This may sound weird, but my illness has been much like many friends I have had in the past. Sure, it has caused me pain.  It seems to come and go from my life in ways and at times that are hard.   But it has also caused me to grow in my faith.  It has brought people into my life that give unending love and support.  It has introduced me to people across the world that are walking the same path.  It has given me the opportunity to grow my patience. It has forced me to realize that God is the only true constant in my life.  And it has given me the chance to teach my children how to face adversity knowing that the Lord is on our side.  If you can imagine this disease as a bazaar relationship with me for a minute, then you can see how my favorite song from the musical Wicked says it best:
                     I've heard it said, that people come into our lives for a reason
                     bringing something we must learn.
                     And we are led, to those who help us most to grow
                     if we let them, and we help them in return.
                     Well, I don't know if I believe that's true,
                     but I know I am who I am today because I knew you.

                    It well may be, that we will never meet again, in this life time
                    so let me say before we part
                    So much of me is made of what I learned from you
                    You'll be with me, like a hand print on my heart.
                    And now whatever way our stories end
                    I know you have re-written mine by being my friend.

                    Like a comet pulled from orbit as it passes the sun,
                    like a stream that meets a boulder halfway through the woods,
                    who can say if I've been changed for the better,
                    but because I knew you, I have been changed for good!                        

heart broken...

I expect a crazy week at our house, but after all...it is May!  Logan has 3 baseball games in 5 days and we are throwing karate into the mix.  John, my husband, will be in Houston all week for a certification program on solar energy, (yes, he is a nerd!)  And I have two important doctors' appointments to attend.

This morning, I met with my cardiologist who gave me some results from tests that I had run last week.  They showed that I have supraventricular arrhythmias occuring.  In very basic terminology, my heart has an electrical problem in the upper chambers of my heart.  Sometimes, it beats too fast.  Sometimes, it beats too slow, and the timing between beats is often irregular.  As I have Hashimoto's Encephalopathy, an auto-immune disease where antibodies made by my immune system are attacking neurons in the brain, creating erratic neurological impulses...it is fair to believe the two are related, but no one will commit to that just yet.  No matter what, we will treat it the same way regardless.  The blessing is that we are going to try to treat this.  I feared that they would say my disease created too many obstacles to treat aggressively.

It appears that we will treat this with a combination of a high-tech pacemaker and medications.  The fact that my heart changes speeds so often, they expect that the battery will need to be replaced every six years, rather than the 10 that many people are able to wait.  The fact that I am on immune suppressants has perks and complications.  This medication is used as an anti-rejection medication, but it increases my risk of infection.  They found mitral valve prolapse as well, but this only increases my chance for a bacterial infection in the heart.  They are not too concerned over this.  Initially, we will start medication and monitor its effects for two weeks.  If I have luck with it, we will wait as long as possible for the pacemaker.  If the medication slows the heart too much, then we will walk into the process of getting the pacemaker.  We are waiting on the results of one more test.  The computers  crashed while I was in the office.  Nice to know I am not the only one with technical issues!  If it shows that my heart is going into a block (getting confused and pausing for at least 3 seconds), then we will do the pacemaker immediately.  Driving will be a game time decision.  As my disease and status changes from minute to minute, the doctor wants me to be the one making the call.  He knows how life changing it would be for me to stop driving all together, so it will depend on how I am feeling and how I react to the medication. 

Lastly, if my prayer warriors would join me in praying about my appointment tomorrow.  As many of you know, the immune suppressant I take makes me 900x more likely to develop about 6 different kinds of cancers.  Those are not good statistics for long term use.  We found abnormal cells six months ago and had them removed.  I go in tomorrow for screening to see if they missed cells or if they have grown back.  It will take a couple of weeks for those results, but just going in for the screening has me a little worked up.

Thank you friends!  I also want to share that I have had other patients with HE read my blog, as well as physicians and they have contacted me.  God has created a network of patients for a really rare disease and I have been blessed to walk some of them through my journey.  I love it!     

Let's play a game...

As you may have read in the previous entry, I had a mix up with my medication a couple of weeks ago, which forced me off my Clonazepam for almost three days.  By the end of the three days, I had a migraine and began to have twitches.  These led to mild convulsions; not the strong ones that I have had in the past.  I restarted my medication, but I was not bouncing back. 

During my last hospital stay, I was in full convulsions and then proscribed the Clonazepam.  Worth noting, they did sedate me for the evening while they ran tests, so the rest probably helped.  But, I noticed an immediate improvement upon starting the Clonazepam.  My doctor was amazed at my quick progress.  This is why I had concerns about not improving significantly when I restarted the medication.  My fatigue was still high.  I was having twitching during the day, and the convulsions would restart in the evening when I was tired.  I could not shake the migraines. 

I visited the Neurologist last Thursday and he reminded me that my condition is progressive and that my body would build up a tolerance for the medications.  This is something that I am very aware of, but I had been feeling so well, I was living in full faith that I was better.  He also explained that part of my symptoms could have been withdrawls, but those should have resolved by the appointment.  We discussed my diagnosis of Diabetes Insipidus, which basically means that my brain was sending wrong messages to my kidneys and they were over producing.  He didn't seem too surprised or concerned.  I got the same response when we discussed my memory problems.  My illness is labeled in the dementia catagory...and my medications list that as a side effect...so again, he wasn't too surprised.  He did increase my dose of Clonazepam and added Gabapentin to assist with pain and help my mind slow enough that I could sleep better.

For the last week, I have been having increasing levels of joint and muscle pain.  Whenever I have a new or returning symptom though, we have to play a game.  We have to determine whether the symptom is from my illness or the medication.  In the end, the Specialists usually ask me, "Well, what do you think?" and I stare like a deer in the headlights.  Then we increase or add a drug.  This time...I think I will let you decide.

Game Objective: determine what is causing the continued headaches, memory trouble, dizziness, fatigue, and muscle/joint pain.

Details: Hashimoto's Encephalopathy is an auto-immune neurological disorder where the immune system attack the neurons in the brain, causing inflammation.  Symptoms include:Confusion, Disorientation, Psychosis, Coma, Tremors, Convulsions, Concentration Problems, Attention Span Problems, Difficulty Retaining Information, Short Term Memory Problems, Seizure Activity, Monoclonal Jerks - Involuntary Muscle Jerks, Dementia, Fatigue, Coordination Difficulties, Headaches, Episodes of Stroke, Episodes of Stroke-Like Deterioration, Right Sided Hemiparesis - Right Sided Partial Paralysis, Aphasia - Speech Difficulties, Articulation Difficulties, Word Finding Difficulties, Fine Motor Movement Problems - Coordination of arms, hands, fingers.

Side effects of Desmopressin:   
•headache •irritability •restlessness •extreme tiredness •confusion •slowed reflexes •muscle weakness, spasms, or cramps •hallucinations (seeing things or hearing voices that do not exist) •seizures •loss of consciousness for a period of time

The disclaimer on my Cell Cept says: If you experience any of the following symptoms, call your doctor immediately: weakness on one side of the body or in the legs; difficulty or inability to control your muscles; confusion or difficulty thinking clearly; unsteadiness; memory loss; difficulty speaking or understanding what others say; or a lack of interest or concern for usual activities or things you usually care about.


Side effects: •difficulty falling asleep or staying asleep •pain, especially in the back, muscles, or joints
•uncontrollable shaking of a part of the body •headache •fast heartbeat •dizziness •fainting •lack of energy


Clonazepam is used alone or in combination with other medications to control certain types of seizures.  It works by decreasing abnormal electrical activity in the brain.

Side Effects: •drowsiness •dizziness •unsteadiness •problems with coordination •difficulty thinking or remembering •muscle or joint pain •frequent urination •blurred vision

So, the winner of the game should head to medical school and become a Specialist so you can tell your patients more than, "Well, what do you think?"  hahaha  

I am not getting down, but sometimes I think the Lord is testing my patience.  That is clearly of "Fruit of the Spirit" he thinks I need to develop.

Behind Enemy Lines

It has been several weeks since I found time to update everyone on the latest health news here at the Dean house.  So much has been happening that it is hard to know where to begin.  That, and my memory is not so good these days!  Heehee

About a month ago, my son came home complaining that his neck was sore and he felt miserable.  Within a couple hours, he had a fever and a horrible headache.  He woke the next morning throwing up.  I was lucky enough to get an early appointment where he tested immediately for Strand B of the flu.  This was a fast hitting and vicious case.  Considering the fact I am on high dose immune suppression therapy, we had reason to be scared.  Many people with auto-immune diseases or suppressed immune systems die from illnesses, such as the flu or pneumonia, rather than their disease.  No matter how you feel about vaccinations, I was informed the next morning by my immunologist that the flu vaccine I received months prior probably saved my life.  I had just come off antibiotics for a sinus infection, and my body had not recovered yet. 

In my previous blog, I mentioned that it appeared my kidney function was off and that I was being put on a new medication.  I am blessed to say that the medicine is working.  It does mean that part of my brain is damaged, but I am focusing on the fact that there is a treatment and my body is responding.  I have also been successful at adding exercise back into my routine, so I have regained some strength and energy.  This is due to the clonazepam that I am taking as an anti-convulsant.  Prior to starting the Clonazepam, I would relapse after only a couple of workouts.  I have been exercising for four months and have been feeling better then I have in nearly two years.

Despite having those victories in hand, I have been struggling lately on another front.  Most of you know that I tackle my disease with prayer and a lot of sarcasm.  Well, increasingly, I am struggling with my memory.  This is partly from the progression of my illness, and partly from the medication that I take.  I forget to turn off the oven, leave water running, forget why I am at the store...etc.  My husband  and I joke about "Mama's brain being a little messed up," but the kids have now joined in on the comments.  For some reason, it stings a little a more.  Watch out parents...everything you say does get repeated.  Then I was sitting at the baseball field with other parents.  One started talking about her crazy mother-in-law and how she forgets to turn off the oven and the parent is afraid to leave her children with grandma.  Turns out, the grandmother was a client of mine when I worked as an outreach coordinator, and now we have the same problems.  I truly feel that the enemy is whispering in my ear because I have been so proud of the progress I have been making.  For those of you who are not Christian, I am sorry if this makes you uncomfortable, but I have witnessed miracles.  I cannot claim them without acknowledging that the enemy exists as well.

The most recent test has been over the last week.  I have been very busy and my body has been tired.  Then I picked up my anti-convulsant medication from the store yesterday.  I had missed a dose the night before because I didn't get to the pharmacy in time.  I ran errands yesterday morning  instead of picking up my prescription.  It was mid-day before I did, therefore, too close to my evening dose, so I missed another.  Last night, I finally got around to taking my medicine.  It was just in time, because I was starting to have symptoms.  The only problem was that the pharmacy gave me the wrong prescription.  Another missed dose.  I finally took it this morning, but I was already starting to convulse.  I had to spend the next three hours in bed while my body calmed down.  This was a reality check for me.  Just as I was claiming how well I had been doing and began to live a normal life, I was reminded that I am sick.  The medication only hides the symptoms, not the truth.  

I recently watched Secretariat with my kids.  The movie starts with a quote out of the book of Job.  After Job has been stripped of his family, wealth, livelihood, and health, he begins to throw a class act, well earned pity party.  God responds to him just as a good Rabbi would, providing answers in the form of a question.

     

                    Do you give the horse his strength or clothe his neck with a flowing mane?

                    Do you make him leap like a locust, striking terror with his proud snorting?

                    He paws fiercely, rejoicing in his strength, and charges into the fray.

                    He laughs at fear, afraid of nothing;

The only problem with this is that it is not in full context.  The Lord is referring to a horse heading into battle, one with his warrior.  I promise that I will continue this battle with the ultimate warrior guiding me, so that his mercy and love can be seen, and we can learn more about this disease for the future.

Gotta laugh!

While sitting at my favorite coffee shop last week, a beautiful woman from church walked up and gave me a compliment about my complexion.  With all the medication that I have been taking, my skin had been having an identity crisis.  It didn't know whether to wrinkle or break out like a teenager.  I was using my daughter's acne cleanser and wrinkle cream!  It is nice to be feeling like my old self and the compliment felt great.  Not only did it make my heart burst, it opened my eyes to yet another way I had made progress.  After being diagnosed with HE, it was hard for many people to quit being so serious.  I found that it made the pills (oh...and there have been many) easier to swallow when I took them with a dose of humor.

Those who remember the night I was first diagnosed might remember my mother, sister, and me laughing the whole night.  There were so many things we found ridiculous.  Well, lets start with the fact that I chose the day that I went into full body convulsions (which lasted a hilarious 12 hours) to wear a mini skirt and 3 inch heals.  Every time the nurse asked me to follow her, I wondered, "Could she do this?"  Heck, I have danced backwards in heals, but never while doing the hippy-hippy shake!  Another nurse asked if I was cold.  Then they told me to drive myself to the hospital!  Really?  And this was my brain doctor!

Then I had an MRI where I was asked to be still, asked to fill out a "check the box" form, and then expected to feed myself rice, peas, and chicken...which came with a knife!  We laughed as I had a food fight with myself and my mother requested a plastic knife.  My pastor walked in expecting to bring peace to the situation and the first thing he said when he saw me was, "Well, that doesn't look good."

Oh, and the Mayo Clinic trip.  While looking at the Air Mall magazine, I learned that they sell stainless steal wallets and portable microwaves...yet I had trouble getting a small jar of raspberry jelly on the plane.  My husband, who shattered his leg four years ago, was pushing me in a wheel chair while wearing his giant brace.  It was camouflage and looked like a prosthetic.  He was asked many times which war he lost his leg in...he eventually started making up stories.  Each one was better than the last, then they would wonder what kind of wife was making him push her all over the Mayo Clinic.  I must have been really bad off!   

 

As time went on, people close to me would have momentary amnesia.  My mother asked me once, "Who is cutting your hair these days?"  Hmmmm...I had a sister that owned a salon, my mother and grandmother went to cosmetology school, yet she thought I walked into a salon and said, "Please give me the hair cut that highlights how my hair is falling out and stringy...maybe a mullet?"  The truth was, my hair was falling out so fast that when I asked my hair dresser to trim it up, she didn't charge me!  Yep...she was done with about three snips!  All in good fun.

Then there were the times people felt the need to point out the fact that I had gained weight.  My steroids made me put on 30lbs in 4 months.  Being that I am only 5ft tall, I went up four sizes.  Several people thought I went through 3 different wardrobes and didn't realize.  Oh, one even said, "It's a shame when that happens to pretty girls!"  Yep, that was an attempt at compassion.

 There were times when it seemed impossible to get out of bed and I threw plenty of pity parties...no really, you can look back through the blogs!  What I have learned though, was that other than God, I played the biggest role in how my life was going to be.  I learned that watching the world go by while I laid in bed was too painful, so no matter how difficult, I try to get out of the house.  When given bad news, I choose to focus on what needs to be done to correct that, and I remember all of the ways I have overcome the past.  My favorite bit of advice was, "Even though you are in pain, you do not get to be one!"  Life gives us plenty of reasons to be sad or angry, so never miss out on a chance to laugh, even if it is at yourself! 

        

Little things...

If you have followed this blog for a little while, you are aware that I have found a new appreciation for the little things in life that we often take for granted.  This point came easily to me after being diagnosed with my illness, but it is something I pray everyone will take the time to notice.

Last Thursday night as I was tucking my 9 year old son into bed, he prayed for two things.  He wanted it to snow that night just like the rumors were forecasting, and he wanted a snow day declared so that the whole family could enjoy it.  "Even if they don't cancel school, can we all just stay here and play in it together?" he begged.  My 9 year old has become too aware of the fact that we may have limited time together, so he grasps at every opportunity for cuddle time or a family movie night.

As I crawled into bed, my prayers were that I would be able to watch my children enjoy something so simple, but new.  We awoke the next morning with the finest dusting of snow and ice and we were able to tell the kids that school was canceled.  The joy on their faces, the giggles in their voices, the squeals as they touched the snow for the first time took my breath away.  What a blessing and a gift for my family.

 I visited with my Endocrinologist Monday and we reviewed some labs that we have been monitoring.  My kidney function has been high for quite some time, and partnered with symptoms that have been occurring for nearly 2 years, we have realized some extent of the damage done to my brain.  Hashimoto's Encephalopathy attacks the neurons of the brain.  I experience inflammation in the brain.  The inflammation initially caused convulsions, migraines, and then stroke like symptoms.  With high dose steroids, most of the damage was reversed.  It appears that prolonged inflammation in part of my brain that controls my kidney function has caused permanent damage.

I am optimistic though.  If my new medication works, it will relieve many of my symptoms and allow me to sleep at night.  This will remove some stress off my body and possibly slow the progression of my disease.  This is my prayer.  Due to some potentially serious side effects, they will start me out slowly with the medicine and monitor my labs closely.  The first night was great, but the second was less impressive.  I am praying this is just because my body is trying to adjust and will settle down.

Thank you all for your support, prayers, and walking this journey with me. 

What is sufficient?

There has been progress on two fronts over the last couple of weeks.  First I want to share the medical progress.  Maybe I should find another word, as the condition that I have is progressive.  I am writing to share that there have been positive changes. 

Hashimoto Encephalopathy is rare, yet we do not seem to have a difficult time finding information about this disease.  Unfortunately, finding accurate information is similar to finding a unicorn.  I do not mean to burst bubbles!  I am just pointing out the fact that few have seen one.  This is true with my illness.  As many of you know, my new neurologist treated 22 cases at the Mayo clinic.  To put this into perspective, there are fewer cases published by the medical community in the US.  As the Mayo Clinic attracts those who have not responded to treatments or have been told that there are not answers, nearly all of the cases my doctor treated were progressive.

Shortly after my hospitalization in October, my doctor informed me that we have done all we can to prevent the progression.  Many people that I have run into comment on how much better I appear, therefore assume that I am healthier.  Realistically, my condition has continued to progress, but I have been able to remove some medications and healed from their side effects.  What has improved is our approach to the treatment.

When I was originally diagnosed 19 months ago, my immune system had attacked the neurons in the brain, which caused significant inflammation.  The inflammation created difficulties for the nerves to communicate with my muscles and organs.  High dose steroids and immune suppressants allowed my brain to heal, but I suffered stroke-like symptoms for a while.  During that time, caffeine and stimulants helped.  However, once the inflammation was gone, I was left with hyper sensitive nerves.  Physical, emotional, and chemical stress would result in a relapse in convulsions, persistent tremors, and poor motor skills.  I was taking medication for narcolepsy to fight the fatigue, but this aggravated the problems.  It also made me higher than a kite.

"Why waste energy trying to stop the progression when we can treat the symptoms?" my doctor asked.  I am now taking a sedative with my immune suppressants which has calmed the nerves, leaving me with very few symptoms.  Relieving my body of the symptoms has given me some renewal, and that is sufficient for me.  We had to increase the medication in November, but found that there is a fine line between calming the nerves and allowing me to drive, cook, and parent.  I now feel better than I have since being diagnosed.  I was encouraged to return to the gym to fight the fatigue.  This is something that put stress on my body before and would cause a relapse.  I have been back in the gym for almost a month now and I have yet to have a problem.  I still fight fatigue, but I have been able to regain some of the strength that I had lost.

The other progress that I have made is on the spiritual side.  Raised in a church, belief in God and his powers were never a problem.  But as I have been studying about healing in the Bible, I had to redefine the word faith.  Faith in Hebrews states that it is the belief that God can answer your prayer and trust that he will.  I always believed that God could heal people.  I have witnessed healing that doctors could never explain.  My problem was with trusting that he would heal me.  Early in my life, the identity I was given by the world was that I was not worthy of much.  That is an identity I accepted and then lived into as I aged.  I instinctively felt as though I was the exception to God's power.  I also have been raised around the medical community where illness has patterns and science proves certain things are inevitable.  If every case of progressive HE has ended the same way, I had trouble excepting that I would be the exception here as well.

Trust is something that we say has to be earned, but God has been unfailing and unchanging.  That should be proof enough.  So I wake up each morning and reject the muscle memory I have of accepting my fate and look to the Lord with Faith, hoping that is sufficient.

Matthew 21:21

Jesus answered, "I tell you the truth, if you have faith and do not doubt, you will be able to do what I did to this tree and even more.  You will be able to say to this mountain, 'Go, fall into the sea.'  And if you have faith, it will happen.  If you believe, you will get anything you ask for in prayer."       

Stages

Living with an illness that is unpredictable and progressive has its challenges, but as I am trying to teach my children, without challenges, we are left without the opportunity to learn and grow.  Our family has had plenty of opportunities to grow this year, but I personally reflect on them as blessings.  Please do not think that I am saying this is not the hardest time of our lives.  There have been plenty of tears shed, but I was given amazing advice from my cousin who was diagnosed with MS over 10 years ago, in her early twenties and well invested in medical school.  She explained that being diagnosed with a serious illness forces you to go through all of the stages of grief, and so do those who love you.  Every time there is a progression or something new, we begin the stages all over again.

I knew immediately what she was talking about back then, but it has only begun to make more sense.  I was recently told that due to the progression in my illness, we have had to increase my medication which causes fatigue, not to mention that HE comes with its own debilitating fatigue.  My neurologist has cleared me to exercise again, hoping that this will help combat some of the fatigue.  I have pulled off a few good workouts without any ill effects.  There is concern though from a few people close to me, because I tend to exercise as though there is nothing wrong with me.  It may be temporary denial, but it just is not in me to accept that I am not whole.  I hit the angry phase a long time ago.  That one came easily, but with devestating effects.  I didn't have an enemy to blame or fight, so I was angry in general.  I became angry with God, too, for a while.  I know in my heart that he didn't make me sick, but he had the power to heal and the power to deliver.  I threw a pity party and felt sorry for myself, my husband, and my kids.  I questioned my worth and the colateral damage being done.  

Then I heard the familiar Jeremiah 29 verse that reminds me that the Lord would not harm me and that he has plans for me to prosper.  Could it be that he allows me to deal with this illness as a way to prosper?  Yes!!!!  And not for my own sake.  I learned to be patient and I am learning to let go of control.  I am learning to turn to the Lord for help first, rather than keeping him as plan B in my back pocket.  But most recently, my youngest son has had a very tough time with my illness.  His heart is so big and his compassion for those around him makes it difficult to thrive sometimes.  Maybe it is because he is my little man, and wants to fix me.  I am trying to show him the way that my illness is a blessing.  We now appreciate the small things.  We celebrate every small step as though it is the finale.  We enjoy life and the pleasures that come with it more.  Our family has been blessed to have an amazing church family, friends that are as close as family, and a support system that knows no boundaries.  Millions of people walk the earth each day with blinders on and we rejoice all the ways we have been provided.

I attended a funeral on January 1, which most people would have seen as a terrible way to start the year, but it too was a blessing.  While the man will be missed and there is a vast void from him being gone, his family stood and shared all of the ways they were blessed through the years by his teachings and presence.  His grandchild sang the Lord's prayer with confidence, because he had been gifted with a relationship with our Lord.  I left the service feeling honored to witness such love.
 

My family continues to deal with endless medical bills and physical struggles.  We are looking into the appropriate time for John to have his ankle replaced.  As the only shock absorbing joint in the body, this will take him off his feet for months.  It will be the better part of a year before he will be fully mobile if all goes well.  This will put the full burden of caring for and transporting the family on me, yet my driving should be limited.  John is also the only financial contributor to the family now that I have been told not to work any longer.  A year ago, I would have crumbled with the stress and been overwhelmed.  Now, I know that the Lord will not only carry us through that time, he will continue to provide as he has done in the past with his perfect timing.

Angel Bradie



Logan and Classmate